We decided to create a blog so we could share with family and friends about "our journey". Our son Noah is 4 years old and he is the constant light in our world. He was born with a rare genetic disorder called Rubinstein Taybi Syndrome.. Life has not always been easy but Noah has taught us how to be courageous. We are so proud of his accomplishments the past four years. He is beautiful, funny, courageous and strong. We feel so blessed God has chosen us to raise Noah.. We also hope that new parents receiving an RTS diagnosis will find comfort in our words. Nicholas is the perfect addition to our family. God has once again blessed us with a amazing, beautiful little boy. We are so comforted knowing that Noah now has a little brother. Life is beautiful having these two angels in our world.
Saturday, September 5, 2009
There Are Still Tears.
Today for the first time in a very long time I wept about Noah's diagnosis. I know it has been 3 years and maybe some people think I should be over it. Well, I realized today that once in a while there will still be times I will cry and that's OK. I wept for all the times that Noah has been in pain and is unable to speak to tell me. I wept for the feelings of guilt that I feel when the feeling of not doing enough creeps its ugly head. I wept for the fact that my son is turning 3 and he is not yet walking independently. I wept for the thought that Noah may or may not be verbal. To not know is what kills me. I wept for the gut wrenching pain that I sometimes feel when thinking of what other "typical" 3 year old's are doing. I'm sorry but sometimes it still hurts. I know I am strong. I know I can handle my life but it's not easy. Nothing comes easy anymore. That is the reality. I get tired of pretending that I am always strong. I'm not. Sometimes there are still tears.